Our Families Journey Caring for a Mom with FTLD-MND

It is important to know as you read this journal that this was Cathy's life post diagnosis...

To know Cathy Truly you must know that she was: a Wife, Mother of 3 boys, Grandmother of 9, Sister, Niece, Aunt, Daughter, and Friend.

Our families journey began with Cathy's diagnosis the week of Thanksgiving 2006, Cathy was 52. Her original diagnosis was Pick's Disease/FTD. Looking back her symptoms most likely began 3-5 years before diagnosis. Most of the Doctors have told us that from onset of symptoms to death... the average timeframe is 4-7 years. (sigh) In the end her brain autopsy showed Frontotemporal Lobar Degeneration with Motor Neuron Disease FTLD-MND. (Basically... Frontal Lobe Dementia with Lou Gehrig's Disease)

Tuesday, February 17, 2009

The seed is Hope, the Flower is Joy

Late Entry from Saturday, February 7th, 09

Tracy & I stopped by the Flower shop in town to check on "Grandma" ribbons for the flowers. And while we were there we asked if they had any seed packets... in February. The lady smiled & said, "It never hurts to ask", and then she returned with the display from the previous spring! So we bought up all the flower packets... at a great price, Thanks Falls Florist!... made some labels to place on them saying, "Plant these seeds with Love in memory of Cathy". Cathy LOVED the outdoors including gardening & flowers. We wanted to Celebrate Cathy's life and we felt like sharing seeds with her family & friends was one way to do that. Sharing Cathy's Love of Flowers and planting hope for the future that will bring joy & a smile when the seeds begin to grow & bloom.


Sunday, February 15, 2009

Toby's Speech

Good afternoon. On behalf of the family I would like to take just a couple of minutes to speak to you about what type of person my mom was. It was this Friday when a lifelong friend called and said “man your mom was tough…I mean, what other mom liked snakes, loved to coon hunt, and could pull-start a three wheeler?” For me that is where my grief began the transition to a celebration of life. For the first time in a while I began to think more about the good times than worry about what was ahead.
There were some key traits that defined Mom. First of all she really was tough… and fun. Conversations with friends and family reminded me of stories that reinforced how strong she really was. Like the time she was coon hunting on Hawk island. After miles of walking and a fun-filled night of coon hunting with her my dad it was time for the return trip across the river in the pickup. What they didn’t know is that the dam had opened a gate causing the current to strengthen and the truck became stuck in the middle of the river. To make matters worse the water was now rising and was coming in the doors of the truck. With temperatures well below freezing, they knew they had to get to shore quickly so they waded to shore with Cathy piggy back on Gayle. After a second trip back to the truck to retrieve the dog who was not about to swim when it could be carried, dad went for a tow truck. A while later he showed up with Tubby Kreuger. Tubby looked at the truck, half submerged in the middle of the river, and then at my mom and dad shivering on the shore and said “Well I ain’t going out there… and she ain’t going out there so I guess it is you.” And off Dad waded into the icy water with tow cable in hand. They arrived home half frozen and in need of a hot bath. Now some of you may say “what is the big deal? Sure she may have gotten a little bit wet and cold but what makes that so special?” Well the part that I left out was that she was 8 months pregnant at the time! Today people might say that kind behavior was reckless but I say it was that same toughness that helped turn her boys into men.
Another story I remember is when we one about a simple trip to the grocery store. Mom was driving and on the return trip we always wet up the hill by the old bottling plant and some how the kids in the back seat always encouraged her to go a little faster than she should up the double humps on the hill. Well this time dad was with and riding in the passenger seat of the rusted out Toyota. I think she was a little reluctant to go as fast as usual so us kids in the back seat gave her a little extra encouragement by yelling “hit the gas mom!”. That in combination of the “don’t you dare look” from dad must have been enough to cause her to push her foot down a harder than usual and we hit that hill like she was driving a dune buggy in the Mojave Desert. On the first hump the kids screamed for joy causing the gas pedal to stay to the floor. On the second hump I’m pretty sure we caught air…maybe a little too much air…and the back part of the passenger seat my dad was glued to fell through the floorboards of the car. Pure joy for us kids but I’m note sure dad said a word the whole way home.
I will also never forget the time we got a wood splitter and she through a fit. “Why do we need one of those when I can split wood just as fast at that thing?” I think dad was a little perplexed but also amused so he proposed a “split off” with the log splitter and she graciously accepted the challenge. When the contest ended, the wood on the ground indicated it was a draw, but victory was in her eyes because while she was red in the face and dripping with sweat…she did not lose to a machine. The other reason I think mom won is because I remember splitting a whole lot of wood by hand after that day…wishing we had a wood splitter.
There was also the time she picked the kids up from the movie in our 56 Chevy. We begged her to “peal rubber” and she did only to see the flashing lights of the patrol car in the rear view mirror. Imagine the surprise of the officer to find a mom with 3 kids in the back seat. She simple rolled down the window and with an angelic grin said “sorry officer…the throttle stuck”. The officer simply said “tone it down Cathy”.
Yes she could be wild at times but as I remember the crazy things mom would do I also remember her most redeeming qualities…her kindness and generosity. Anyone who knew her could tell you a story of how she helped them in some way. I witnessed it countless times and she never expected anything in return. If someone was in distress she was there. If someone needed something that she could provide, it was theirs.
Like many of us, she was an imperfect person in an imperfect world. She was a Wife, Mother, Grandmother, Daughter, Aunt, Sister, and dear friend. She will live in the memories of all that met her and be forever immortalized by the lives of her grand children and future generations.
And finally, on behalf of the family, I would like to thank some of the special people that have shared the last couple years with us. The wonderful, caring staff at Pine View, the many friends and family that came to visit and care for her, and all those who have offered their prayers and condolences. One good thing that has come from this tragedy is the reaffirmation of the goodness in people. Thank you very much and god bless.

Saturday, February 14, 2009

Thank You's & Poem

I am not sure where to start... this week has been a blur. I want to let you all know that we plan on leaving this site up... as a remembrance to Cathy & to help those who are just beginning their journey with this disease, to maybe give them somewhat of an idea what they are facing & how to get through it.

Toby & I will also be posting new information on here in the future. And I would also like to post what Toby read at his Mom's funeral... some great Memories of Cathy!! That enabled us to all smile & laugh in the midst of tears.

I want to say a HUGE THANK YOU to all our family & friends for their support over the past week. Having the house full of people was so HEALING for us all. A few nights Uncle Roger played his guitar... and a few of us sang along (what happens in Wisconsin... stays in Wisconsin!), it lightened the mood & Cathy always Loved music & dancing! Thank You to everyone who brought food over, sent flowers/plants, sent cards & memorials, sent their thoughts & prayers through email, etc... A Special Thank You to Rev. Thoreson, the ladies of Little Norway Lutheran Church, & Dave the Organist. Also a huge Thanks to Buswell Funeral Home... they were ahead of us each step of the way & helped make things go smoothly amongst all the emotions involved!

Also Special Thanks to Sue & Bill... for traveling the miles to be with us Monday, having their support meant a lot to us. We did not ask to be on this journey together... but having someone who 'knows' what you are going through & understands the depth of it all speaks volumes to our hearts. They are truly an amazing family & our thoughts and prayers continue to be with them as well.

In Gayle's words: "It is difficult to find the words to express our feelings on the great job of the staff at Pine View Care Center. These people care & love their patients. It's not just a job, rather something they love to do. As a family we made many good friends that we will always remember."

And from me: Thanks to the staff that were with me on Thursday during Cathy's passing. As a nurse I have been with patients as they pass... but never with someone I Love, I had no idea how difficult it would be. Words cannot express what it meant to have all of you around me & Cathy. Thanks to the CNA's, the Nurses, & Shelly... for rubbing my shoulders as I tried to hold back tears letting Cathy go.

Friday morning I woke up & went out on the front deck to get my morning coffee... diet coke... and as I reached for it I was overwhelmed by the Sunrise. It was so Beautiful & just over the treetops... yellows, oranges, blues... it seemed to embrace me in warmth... & it felt so refreshing, like taking in a big breath of fresh air. I felt almost as if it were a sign from Cathy. - And then later on that day Gayle said to us... "This may sound strange to you, but this morning the sunrise was so beautiful & reflecting off all the mirrors on the cars." He felt it too! I do believe it was a sign from her. How Amazing! (Some of you may think... you guys are losing it... I know our emotions are wide open this week, but I know some of you have felt those moments too after losing someone you Love.)

Below I am going to post a poem Cathy wrote. Our son Chase, age 8, read this poem at her Funeral Monday. I actually tried to talk him out of it, thinking he could not get up in front of a church full of sad people to read it, but he finally said to me, "Mom, I am not going to change my mind. I am doing this for Grandma." And he did. My heart was soaring in the midst of sadness. We were so Proud of him & we know Grandma would be too!


OF ICE AND MEN

From young men dressed in orange, black and white.
They transform to giant athletes skating with might.
All sizes and shapes, goalies, forwards and defense.
They skate and shoot, no challenge too intense.
Checking and hitting the boards with a crash,
Sticks reaching, swinging. Oh, no! There’s a slash!
A player goes down, soon a whistle blows,
Their player, our player, no one knows.
All stomachs are tight, hard to stand the suspense,
With help, the player rises and skates to the bench.
Everyone claps and cheers with relief all is OK.
No matter which side, it may be your player some day.
As the game goes on, the shouting gets fierce,
Parents and friends wonder, can they ever hear us?
Win or Lose, when all is done,They shake hands and skate off, friends everyone

~written by Cathy Handly

Friday, February 6, 2009

Funeral Arrangements Info

Friends & Family are invited for:

Visitation on Sunday, February 8th, from 5-7 pm at the Buswell's Funeral Home (106 S. Second Street, Black River Falls, Wisconsin).

Funeral Service will be held on Monday, February 9th, at 3 pm at Little Norway Lutheran Church (N4755 State Hwy 54, Black River Falls, Wisconsin... approximately 4.5 miles west of town)

Please join us at the church for a light meal after the service to Celebrate her Life!

Memorials may be given to either the Mayo Clinic Alzheimer's Research Center, 200 1st SW Rochester, MN 55905 -or- the Jackson County Humane Society, 403 Pineview Rd, Black River Falls, WI 54615.

Online condolences are available at http://www.buswellfuneralhome.com/

Thanks again for all your Thoughts & Prayers!!
The Family of Cathy Handly

Thursday, February 5, 2009

Cathy is in Heaven now

Cathy passed away today at 3:30pm. I was sitting by her side stroking her hair & telling her we Loved her & that her boys were all going to be ok. Telling her it was ok to go & be with her Dad.

We are overwhelmed right now... so I will post more later.

Funeral & Memorial information will be posted as it comes available.

Thank You for all of your thoughts & prayers.

Please Pray for Cathy

Sending a Prayer request out to all our family & friends...

I am praying for:
Comfort in her suffering,
Peace for her fears,
& that God will surround her with his Loving Presence.

Safe travels for all of her family & friends.

Wednesday, February 4, 2009

Not good signs...

Today has been another exhausting day for Cathy. Not being there with her it is hard for me to put it into words... but after talking with family, friends, & the staff I understand that the signs are not good... She is not eating (although tonight Gayle fed her supper, but after he left it all came back up), her color has changed, she has mottling on her hands, she is running a fever, she is unable to keep her meds down, she is weak, she can still walk but they used a wheelchair to take her down to the dining hall, and she has lost her smiles.

I picked my parents up tonight at the airport & they were planning on staying until Sunday to visit us before heading home with Grandma (Grandma has been here visiting us for 2 weeks). So now they are going to watch the kids so I can go over to be with Cathy & Brad. I want to be there with Cathy as much as I want Brad to be able to go to work knowing that someone is there with his Mom... so his mind is on work & not his Mom. (as much as it can be)

Toby & family are also heading down tomorrow from North Dakota. Gayle is working out of town (he has needed to go and been distracted with Cathy the past few weeks, but now he has to)... one state this morning, swung through and saw Cathy at supper time, and off to 2 more states tomorrow & then back home tomorrow night... ugh. While Gayle was there tonight she ate most of her supper... but after he left Barb was visiting and it all came back up. It seems as if she is trying to be strong when Gayle is there. I wonder if this is true... you hear of it happening, being strong for those that you Love... Holding on for them. But with this disease it is so hard to know?

Tuesday, February 3, 2009

Update from Barb S

Things are pretty much the same today. Gayle thought she looked better, I on the other hand thought she was weaker and more tired looking. She went to the dinning room in the wheelchair and had a frozen icey, something different. It went down well, but a few minutes after is when she had problems with getting air. Then Cathy and I went back to unit and Shelly and I entertained with Karaoke,(missed Jean) but not any smiles today and trust me it's something to laugh about. I decided today that I'm not going to feed her anymore in the dinning room at snack time, I'll leave that up to hospice,to risky. In the unit there are nurses close by if needed. Gayle went out of town, so I made sure when I left today that they call me if she gets worse and Brad is working, I'll go right away. I've also made arrangements at work if I need to go over on a work day. Angie said Toby called today to check on things. I made toffee bars for the staff up in the unit today to thank them for all the TLC they give Cathy. Well, I better get some supper and then Pete and I will check on Cathy before we go to the hockey game.

Monday, February 2, 2009

Cold...

Cathy woke up with a cold early today. She is full of phlegm and unable to cough it up. I was surprised because last evening Gayle & I took Misty (her dog) in to see her during the SuperBowl and she seemed to be doing better. They had tried cutting milk products from her diet & I was hopeful that was causing all the extra phlegm. But now even breathing is difficult for her & exhausting... Chase & I went in to visit her at noon, leaving Mia in the car with my Grandma (Brad had called to heads me up that she was not doing well today at all... and maybe not to take the kids in... but Chase wanted to see her). She was sitting in the TV room when we walked in & looked at us with a half grin. She didn't smile again while we were there... except for when Chase said in her ear, "This is our secret Grandma... but you are the Best Grandma I've ever had!" Her smile came slowly & she raised her chin up... as she smiled a thick bubble formed between her lips...

When she started to gag on her phlegm she would sit upright and make sounds... I would put my hand on her back. She would then lean back and grab for my hand. Just looking at me with a blank stare. As if piercing a thought into my soul... I can't tell you what she is thinking/feeling... I wish I could. It is such a helpless feeling.

Just before we left Chase & I held her hands to say a short prayer with her out loud. As we got up to leave she followed us & wanted to go with us. She walked slowly & seemed so tired today. She was unable to push the door open so she leaned her back against it and it only opened a slight bit... but enough to set off the alarm... the aide came and took her to the dinner table & we walked down the long hall... that we have walked so many times before... but this time with even heavier hearts. For the first time ever since we moved her in I did not want to leave. I just wanted to sit there and hold her hand. Or know that someone was going to be with her and hold her hand.

See note from Barb today below... It sounds like they have started her on Abx and changed a few meds to hopefully help with the phlegm... they are also suctioning her & have been since Wednesday.

Note from Barb S

Hi everyone, Just an update on Cathy's day. I stopped on my lunch break today and big change since yesterday. Very weak, needs wheelchair to go outside the unit and it was the first time that she just gave me a blank stare like she didn't know me. I had to go back to work, but went over after work and Jackie was there getting ready to take her for a ride in the wheelchair out in the main part of the home. After Jackie left I just sat and talked with Cathy and she just held my hand tight and had that stare. They had to suction her again just before I got there because of all the secretions. Hospice is keeping close watch on her. The Dr. has now started an antibiotic and a different med for the secretions, hopefully it'll help. I'm off tomorrow, so I'll spend alot of time with her and will keep you posted. Love to you all! Barb

Family visit

We had a good weekend with Missouri Family! Gayle's step Mom Rosalie, Sister Lisa, & Niece Sis were here. Cathy had smiles for Lisa Friday night when we visited & for Lisa and Sis Saturday. Rosalie went with Gayle on Sunday and took her a musical card... that she carried around Sunday & Monday! She LOVES those musical cards.

It was nice to have them here visiting, have a few laughs singing Karaoke on the wii!! (what happens in Wisconsin, stays in Wisconsin!) It was Brad's birthday this weekend & it was also good to have them as a distraction to cheer him up! And it was Wonderful to have a good cook in Cathy's kitchen again!!!

Sunday, February 1, 2009

a few changes...

Here are a few changes in the past 2 weeks:

*Gayle got her a new chair... it's a wing back that she can sit more upright in & if she falls asleep her head falls to the side and rest on the 'wing'. It is easier for her to get in and out of as well.

*Brad & I were talking about his Mom and we both have noticed a 'twitching' in the corner of her right eye... not in her eye but the skin near the tear ducts.

*Her lower lip just hangs open... you can see her bottom teeth. It is very rare to get a smile out of her.

*She is sleeping more often... falls asleep when you are visiting.

*Looking around you to see the TV... very short attention span.

*She has been holding our hands for a few months... but in the past week has been grabbing for our hands more often

*Wanting to leave with us again... follow us out of the unit